204am Room 515

This is in honor of my dad, and the beautifully different relationship I had with him. My normal social butterfly extroversion has vanished, so since I need to connect somehow for my own health and because I know I'm not alone in these experiences, these notebook shares will let you in instead. I start in Room 515, Shadyside Hospital.

July 2, 2022

20220628 204am Room 515 Shadyside Hospital, "The Plazek Soundtrack" playlist we made - Michael Kiwanuka piano joint & the light, Iron & Wine calling it dreaming, walking in Memphis, adele when we were young, alexi Murdoch some day soon & orange sky & all my days, northern sky – nick drake, slip away and grey area millaze, dad’s faves




I did not apologize when I broke the hospital visiting rules tonight. Two hours had passed since my pillow buzzed me awake and my heart dropped to see his photo, because I knew he hadn’t touched his phone in weeks. It was him though, with that IV alarm in the background because he’d bent his left arm like he wasn’t supposed to for whatever reason. The nurses weren’t coming, he told me, it was a problem with the system. I told him I agreed, underpaid and understaffed, but if you hit the button then they’ll come soon.


The pattern began: I’d remind him about the nurse call button on his remote control again, he’d struggle to find it, we’d wait, I’d distract him with good thoughts and memories, he’d interrupt with his pain, I’d tell him it’s okay, he’d ask for help, I’d tell him I’m right here, he’d say “thank you”, then he’d say his head hurts again because of that insane alarm. I ended up being wrong sometimes about the night nurses coming: it would take 5 or 6 button hits and over 15-20 minutes. I really do respect nurses incredibly, but something had to be wrong with this particular floor that this was such a pattern, when he was in such pain. Complaining about pain is a new thing for my father, I'm not exaggerating when I say he never did before, even through years of dialysis, two kidney transplants, heart disease, and more.

That said, I won't remember him as a man in pain, and I urge you not to, either. If you don't already know him and his endless wisdom and dad jokes, I hope as I write you get to meet him. Back to the narrative:

I remained huddled under my childhood bedroom quilts for an hour and a half, guiding us through this pattern, being there for him exactly like he'd always been for me every time I needed it. And then he said it:

Dave’s here. He couldn’t figure out what Dave wanted. Everything was green, dark green, green like Ursula, mint green.


With my pre-packed hospital backpack, I moved through my house to the front door and via my Airpods I narrated to him: out the door, in the car, turning onto Babcock, getting onto McKnight, taking Veteran’s Bridge, getting on Bigelow Boulevard, entering North Oakland, parking in the South Aiken lot, locking the car, walking to Emergency, running down the hall, calling the elevator, I’m on your floor.


It’s 204am now and my dad’s sleeping soundly on my right, because that's what happens when I'm here and he knows it. The 12 hour 52 minute Spotify playlist I made him today, from our other playlists we started making last summer to share his favorite songs, drifts out of the Bluetooth speaker I bought him at Target this morning. I’m typing from an incredibly squeaky chair, in my high school Bruster’s Ice Cream hoodie, with the outline of the Cathedral of Learning against the night sky on my left. I’m glad I brought my backpack with the snacks because my adrenaline will wear off at some point and I have leftover sprouted grain chocolate chip banana bread and a bag of maple walnuts and cashews to open from that hippy Centred Cafe down the street that I'm glad has so many healthy, kinda boujie snacks - which if you know me, is totally me.


It’s an understatement to say he was relieved to see me arrive three nights ago in the ICU, in the middle of the night (which would be my first overnight visit of four total). He saw me come in the door and he reached out both hands for me, “You came – God bless you.” He said before I got there, when the clock said "22:33", he almost died. I thought about that when he talked about Dave tonight, a few nights later. Dave was dad’s best friend who died of a heart attack at the wheel a few years ago.


I don’t know what’s happening or if I’m doing this exactly right, but I’m going to keep coming back to hold him here at night, even if I have to keep fighting like a lot of this hospital journey has been - a fight for him. It's complicated, I don't know if I'll get into it, but for one detail: as much as I usually respect things like visiting hours amended for covid, this time in his health was different and I knew that, so that's why I fought to be with him overnight. Look, he'd figured out where his phone was, how to unplug it, and how to call me. I don't even know how he did that in his current state. He said he needed to not be alone, and even though we had many talks lately about how he's never *actually* alone, I get it. He's been a physical presence of support my whole life, someone I run to or call for tons of happy things, yes, but also times I needed to not be alone, too, like when I felt homesick, played a rough show, found out a friend was gossiping about me behind my back, gotten my heart broken by boys, etc. So, since he's always been there for me, and always will be, I'll be here with him now. I'll make it happen. Duh.

So our routine now goes like this: I calm him with my presence and his favorite music, he falls asleep for longer intervals each time, and instead of sleeping, I eat my obnoxiously healthy snacks and calm down to our playlist, too. I’m a morning bird borrowing some night owl wings lately.


I’m inside a saga I never imagined this summer would bring, and I’m going on three weeks, but actually a lifetime of thinking through how to explain my dad’s health journey and give it justice. It’s more profound than anything I’ve ever found in movies or books or music. You can't come up with this stuff, it's too unbelievable. Twenty four years, I'm pretty sure, of miracles to the point where my family doesn’t brag about them anymore because at a certain point it’s not worth seeing recognition fail to register in peoples' faces. I don't blame them for not getting it though, I don't mean for it to sound like that. Sometimes the unbelievable quality of his miracles goes over my head too. That's got to be some really human thing, becoming immune to crazy things. Anyway, most of the time it doesn't go over my head because I sit and reflect really hard about it. I like having stuff like that dawn on me deeply.


I wasn’t planning on writing about it at all for that reason, I usually only briefly mention all his health milestones in my journals, at least since I was in grade school and would fully hash out my existentialism. But tonight I am writing about it. Maybe there’s something inside me I can say about it, and a reason why I should. Call it processing, catharsis, Mister Rogers wisdom, art, call it something for me, please, because I don’t want to overthink it and let it lose its power tonight as I go in.


Lymphoma and PTLD are new to me, I still haven’t had the heart to google it all since we found out the biopsy results two weeks ago (right before I played two new songs about him at this Blockhouse open mic) so I’m not going to start now. As a rule, I don’t look up dad’s conditions, I think it’s a coping mechanism to avoid going down internet rabbit holes of biology subject matters in which I’m a common novice.


On the flip side, my decades-long side hobbies of studying neuroscience and psychology are paying off: I know what to talk about with my dad, how to be here with him, and why to be here, especially on these overnights I’m squeezing out of the hospital policies. My sister told me I should get into this field because I have such a knack for it, but I think what she sees in me isn’t about medicine and palliative care certifications, it’s something else. I don’t know how to explain it yet, but I think it’s something I gained from my relationship with my dad, all my life. It’s about love, in away that’s not talked about enough. Not as romance, highs, or cuddly kisses, but as something else. I don't know how to say it. I just get it.


So instead of finding a word to describe it, I’m going to be curious about it as I revisit and share my notebook entries from this venture with him, and I’m going to let in anyone else who wants to explore it with me, by sharing the cumulative writes from my 3 notebooks (pocket, full-sized, and computer) on my website here (in addition to whatever music seeps out of me in the coming months.) I’ll even include my normal form of starting entries by writing the date, time, location, and whatever music I’m listening to or other notable details that set the scene. Look, I’ve written in notebooks pretty much every day since I was real little, but I don’t share it except when pieces end up in song lyrics, so that begs the question: why bother sharing now?


If you’re new to psychology and neuroscience, especially of the nervous and endocrine systems, take it from me that there are both physical and mental consequences if humans don’t connect to each other in some form or another. And frankly, I need this right now because I’m not super able to connect with people like I usually do, and I think this will fill that void. I dread having to talk to anyone outside my immediate family right now. My normal social butterfly extroversion has vanished.


I didn’t expect that. I will not pick up the phone if it rings. I keep texting everyone back with messages that are uncharacteristically me: a short phrase of thank you, love you too, and a heart emoji that I make sure is white or red, not black like I usually do because that is too on the nose. I’m not responding with long-winded philosophically poetic thoughts, casually weaving in invitations to engage deeply if the other person wants. I do try to kindly warn that “I’m not really good at my phone right now” when honestly what I really mean is “I know you’re being incredibly nice and I love you so much but I’ll explode if my phone sends me more notifications right now.” If you’re one of these people who have so kindly reached out to me, thank you forever, I hope this notebook section here will fill you in like I would normally would with a phone call or text chat.


But also I have this hunch that the reason I’m going to efforts to share my notebook here is because these experiences of sickness, love, & loss are universal, and diving into universal experiences in order to resurface with art is both a requirement and a thrill of my music vocation. (In fact, the first three albums in The Dialectic already started this journey of my relationship with dad, with pictures of him, samples of his voice, songs I wrote with him, and endlessly more.) So I’m here for both me and you reading this. May we navigate our own unique variations of life and high five along the way.


An important final note: this write is a little unconventional for me, because it’s a hybrid with both that night I drove out to him and broke the visiting rules, and today, Saturday July 2. My dad passed away yesterday morning, Friday July 1. I was holding his hand, like I had been all night long. 


(If I see you at the funeral home, funeral, or wake, please help me by (1) reminding people to add *email addresses* in the guest book to make it easier on my mom sending her thank you cards, and (2) by being a kind mask police officer with me. Covid's been insanely traumatizing for us with dad immunocompromised from his transplants, etc, and there are still other families like ours out there, so we will forever be respectful to them - and also, we simply cannot and should not have to handle the stress and physical suffering of getting covid while mourning dad right now. We're all vaccinated and boosted, but it's not enough with the variants. Please be kind, and help us ask others to be.)

I'll share more again soon,

- M

Return to my notebook.